How Survivorship Differs for Men With Metastatic Prostate Cancer

The word ‘cure’ and the aspects or survivorship are different for someone living with metastatic prostate cancer compared with those who don’t have metastatic disease, according to Bob Lane, a prostate cancer survivor and patient receiving Erleada (apalutamide) treatment.

“You are never truly cured when you have metastatic disease; it's a bit different. Once your [your prostate cancer] reaches the metastatic level, it's managed, not cured,” Lane said in an interview with CURE. “So, I'm being managed, and that's good.”

During the interview, Lane sat down to discuss his own experience with prostate cancer, and described what survivorship means to him as someone living with metastatic disease. Additionally, he went on to share what he hopes that other patients will take away from the conversation in order to help navigate similar experiences.

Transcript:

As someone living with metastatic disease, how do you view survivorship, both physically and emotionally? What message do you hope to share with others navigating similar uncertainty?

Well, first, I like to remind people that if they say you're cured, you are never truly cured when you have metastatic disease; it's a bit different. Once your [your prostate cancer] reaches the metastatic level, it's managed, not cured. So, I'm being managed, and that's good. Management involves many treatments, and these treatments typically go on forever.

Let's talk about the physical aspects first. There are strength issues; I lose a lot of strength. Fatigue is a major factor, along with muscle and joint pain. There's also a three to five percent subcutaneous fat gain on an annual basis. Most of these can be managed somewhat by the patient. Predictability and consistency are important in a patient's life so you can prepare for what you know is coming, including side effects. Once you know what your side effects are going to be, you can manage them.

For instance, to maintain your strength, you can do resistance training to help yourself with that, maintaining some muscle mass and tone. For fatigue, I take naps occasionally, not very often, but if I feel fatigued, I'm no longer too proud to nap. I've asked other gentlemen I meet if they take naps. Different guys will say, “Yeah, I do,” and I’ll ask, “How long?” They will say, “Four hours,” and I will tell them, “That's not a nap; that's sleep.” So, I take naps between 25 and 40 minutes, something along those lines. I haven't reached the point where it's twice a day, but I'm willing to do it if that's where it goes. Typically, I get fatigued in the afternoon, and that's pretty consistent.

For muscle and joint pain, there are things you can do. You can take different anti-inflammatory drugs if you're tolerant; unfortunately, I'm allergic to all of them. But there are other things you can do, like managing what you eat. A lot of stuff comes out of a box. Refined foods are bad, added sugars are bad, red meats are bad, fried foods are bad, as are trans fats and excessive alcohol. This doesn't mean eliminating all of it, but if you're a fried food junkie, you may want to dial it back some. If you're a candy junkie, you may want to dial it back. You'll have a little less inflammation, so you can help manage some of those things.

It's when things change that scientific management becomes mentally challenging as well. Change is something a patient generally dislikes; you want to know what to expect. So, maintaining the same drug regimen is key whenever possible. In over four years, I've been taking three different drug protocols. One of those changed after I mentioned them a minute ago. The third one is for bone density, which I take to augment my bones.

Within four years, the first of those drugs, the suppressant, was changed, which meant a whole new set of side effects to start dealing with, and that was a pain in the rear end. Then, in the third year, the bone density drug changed, so that was a whole other set of side effects to deal with. I had just finished dealing with the side effects from the suppressant, and now I'm dealing with the new side effects.

Only one drug has remained constant, and that's the inhibitor, Erleada. In baseball terms, that's been a blessing for me. I guess I'm hitting one out of three, .333, which is a good batting average. But I'm happy that at least Erleada, in this case, has been constant for me and has been able to stay with me. It's like I know what those side effects are, and I deal with them, and life goes on.

Emotionally, I mentioned this a moment ago when I was talking about change, but a few years back, I stopped truly wondering and worrying about if the drugs would stop working. This is because I know new drugs and new protocols are constantly coming onto the market; scientists continue to do a fabulous job. Honestly, I rarely think about how my own prostate cancer might lead to my own mortality. It was a good bridge to cross to get to that point, but it took a while to get there, and it's a whole lot better being on this side of the bridge because I do know that there are other options for when things happen and when things change.

I guess the message I like to share, and I've shared this specific message with people — sometimes I meet people in this situation who are just angry as a hornet — and try to convince them to get positive, to basically stay healthy. Do your own work on getting healthy, maintain hope, build a team of support around you, and ask questions of your care team.

I guess it sort of paraphrases Morgan Freeman in “Shawshank Redemption”: “You get busy living, don't get busy dying.” There's a lot of life to live. I'm traveling, doing things, helping the kids, doing projects around their places and stuff like that. So, life goes on if you allow it to, and if you choose that way, for the most part, most people can if they choose to.

Transcript has been edited for clarity and conciseness.

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